The following is a guest post from my friend Bobby. If you’ve heard me speak at conferences you might have heard me talk about his extraordinary family. I’ve asked him to share his perspective as a dad raising a special needs child. I’ve learned a lot from Bobby over the years and I hope his stories will inspire, motivate, and encourage others raising special needs children.
I am Bobby Williams and I am a dad to 3 kids with 2 of them having medical issues. My middle child, Kyle contracted group b strep during labor and it grew into group b strep meningitis. The infection destroyed his occipital lobe. Kyle has multiple disabilities from cortical blindness to mental retardation and is now 16 years old. This past year his little brother started having seizures as a result of him going through puberty.
Getting gifts for a child with special needs is is one of those small things. When Kyle was an infant it was easy getting him Christmas gifts. It was easy buying a boy who was mostly blind with other disabilities age appropriate toys. Now you might be thinking here, what is the big deal buying gifts for special needs kids?
Men who become dads, especially dads to sons, have this internal drive for their kids to be the best. Competition is part of our DNA and in a way it is part of the woman’s too. I have been around my friends when the mom’s would brag about the percentile their four month old was in and how the pediatrician thinks little Suzy is the smartest four month she has ever seen.
As parents we are programmed to think our kids are the best.
It is part of the job we embrace called parenting and that pride thing we have in our offspring. This is particularly true for dads and as our kids get older that pride seems to take root and grow with them too.
In regards to Christmas and buying gifts for special needs kids, it is easy when our kids are babies because most babies are pretty much the same. As time passes though our special needs kids slower development takes hold and the other normal kids in their age cohort are developing and pass our kids rapidly.
Still buying toys and gifts for a four year old special need kid means you are likely buying toddler toys. The hard days hit for me when Kyle turned seven or eight years old. My other kids could verbalize a wish list and my youngest still believed in Santa and was excited about Christmas.
Kyle on the other hand still had no clue about time, calendars, birthdays or Christmas. That alone made it a challenge to buy for him and at times as parents we just wanted to give up buying anything for him for Christmas because it didn’t matter to him. As he aged that feeling got stronger and stronger and Cole, my younger son, passed him developmentally in every way.
As a dad I wanted my boys to play with Legos, enjoy model airplanes, RC cars, and every other cool toy so I could play with it Christmas morning. Raising Kyle meant none of those things.
In a way the meningitis robbed me of that part of raising a boy.
Any man worth his salt will take a lot of joy having a boy and doing boy things with him as he grows up. Christmas toys are a big part of that in our culture and having a son who is ten years old who can’t play with cool ten year old boy gifts is a sting that hits especially hard at Christmas.
So there we are sitting on the toddler aisle at Target six years ago and it hit us hard that our ten year old son was still only able to play with toddler toys. I think we just gave up that year and as a dad it was one of those bitter moments of raising a special needs kid and it made Christmas bitter.
When family and friends wanted to get Kyle a gift we had no answer for them. It was as if we were in Christmas gift purgatory with him and there was no way out, ever.
It was hard, really hard to go through this part of life with him.
If you are a parent, mom or dad, with a severely disabled kid this Christmas or Hanukkah and you are at the age where your son or daughter is still playing with infant or toddler toys but chronologically they are tweens I am here to say you will get through it.
If your nine year old son can only play with a fisher price school bus, as this is one of Kyle’s favorite toys to this day, it is perfectly ok to get him a toddler toy.
The sooner we embrace our kids where they are versus where they would be if they were normal, the happier everyone will be.
This advice is easy for me to write because it is one which I have struggled with in those years. It is a quiet and often lonely struggle parents of special needs kids face. It is a small struggle but during the holidays it is very real and very bitter sweet at times too.
This Christmas season I want to encourage moms and dads everywhere facing this struggle for the first time that you are not alone in this experience.
Others have come before you and if you can embrace your kid’s limitations and find that one thing that lights up their world, then get that for them. They may not know what Christmas is truly about, but they know love and when we dare to express it in the way that reaches them, their hearts will light up. In the end is that not what Christmas is truly about, love that our Heavenly Father sent us?
Embrace your kid, love them this Christmas and don’t get hung up on the type of gift, get hung up on enjoying the season and love your kids where they are today regardless of their abilities.